Tag Archives: SMA Syndrome

Mackenzie had a post-op check-up with Dr. Bambini today (who did her duodenojejunostomy). He came in the room and said that she looked so much better and was glad to see her smiling! He even noticed that she changed her hair color and was pleased that she was eating well and not throwing up. He said that he should have done the surgery sooner 🙂

At the doctor’s office

He looked at her stomach and said that he was going to take the tape off of all of her incisions. Mackenzie was worried that he was going to do that and immediately started getting anxious. She grabbed my hand and the doctor started pulling off the tape. Mackenzie was squeezing my hand and trying not to cry! The nurse that was in there starts pulling off the tape on the other side of Mackenzie’s stomach and says to Dr. Bambini, “here, this is how you do it.”, and starts pulling up Mackenzie’s skin really fast and pulling the tape up and off. What she was doing looked more painful, but she knew what she was doing! The nurse said, “see, that doesn’t hurt, does it Mackenzie?”. Mackenzie laughed and said that it actually didn’t hurt the way the nurse was doing it! So, Dr. Bambini stopped even trying to help and just sat back and watched the nurse do it! It was pretty funny 🙂

Scars

Three scars are pretty visible and the fourth one blends in pretty well under her belly button! It’s like they made it a curved line underneath her belly button to blend in…you can barely see it!

After that, he said that the incisions look good and that there was still some glue over some of the incisions, but that will eventually come off. He said that since she had not been throwing up that everything is moving through like it should and she really doesn’t have any restrictions as far as he is concerned. She can swim now. He asked her if she had any questions and the only thing she is concerned about is when she can ride roller coasters and Carowinds 🙂 But that will have to wait a few months!

I asked him how many cases he sees of this and he said that he sees about 2-3 patients per year that could have a diagnosis of SMA Syndrome. He said it’s very rare and even more rare that it requires surgery. He mentioned how swollen her duodenum was and that she really did need the surgery since she just wasn’t getting better in the hospital. He has never had a patient to have this after spinal fusion surgery. So, Mackenzie is a first case for him and for Dr. Wattenbarger. He said that he is following a girl right now that has it but she didn’t have anything that caused it – I guess she has had it for a while and they have recently diagnosed her.

We talked about the different ways that her surgery could have been done (I think there is 3 ways) and why he did it the way he did. He talked about one way being to just move the intestines out of the pinched area but that is rarely successful. He said that it usually causes more problems than before the surgery. So I’m glad he didn’t do it that way. He said that with her anatomy the way he did it was the best route for her. He said the only thing that she would be at risk of later would be a hernia if her intestines looped through the loop that was created and get tangled up in themselves. If she ever has to have surgery in the future then we would just have to let her doctors know about her anatomy and not to cause further problems in there.

He did mention that she was at higher risk for scar tissue where they did the surgery. I asked how long that takes to show up if it’s going to be a problem and he said that it normally happens in the first two years but could happen any time. He said that the symptoms would be the same as she had before…pain, stomach distension, vomiting, etc. He said that if she starts to have those symptoms again to call their office directly and they could get started doing tests and stuff instead of taking her to the ER where they wouldn’t know about her past issues. But, hopefully we won’t have to deal with this ever again.

So, the visit was good and it was good to see Dr. Bambini again. He said that since everything was going great that he really didn’t have to see her again. So, off we went! Hopefully never to return again 🙂